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“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 5 Excerpt

Dec23

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseIn this sixth installment of brief excerpts from each chapter in the book You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, we look at the fifth step in the journey through dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 5, which provides a thorough look at how to acknowledge, recognize, and respond to the fifth step in the journey through dementias and Alzheimer’s Disease when paranoia emerges.

This chapter shows why and how paranoia is part of the journey through dementias and Alzheimer’s disease, the impact it has on our loved ones, and how we as caregivers should respond to them both medically and personally with kindness, gentleness, and understanding.

This fifth step requires a lot of love, a lot of commitment, a lot of sheer determination, a lot of perseverance, and a lot of courage on our part as caregivers because this, of all the steps, can be most brutal emotionally to us personally because it will literally chew us up and spit us out on a continual basis all the way through it.

This chapter offers practical and accessible information to help us and our loved ones navigate this step successfully and intact.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The series continues with the inclusion of excerpts from Chapter 1, Chapter 2, Chapter 3, Chapter 4, and, with this post, Chapter 5.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

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Excerpt “Chapter 5: ‘Confusion Never Stops, Closing Walls and Ticking Clocks’”

“Pervasive paranoia is the next step in the journey of dementias and Alzheimer’s Disease. At some point, hallucinations and paranoia tend to overlap – the hallucinations, especially if they’re scary will elicit panic and anxiety – but paranoia eventually stands on its own as a distinct step in the journey.

Paranoia has a complicated root system that we’ll break down into its components so that we understand why it occurs and what it looks like.

  1. One of the roots of paranoia in our loved ones with dementias and Alzheimer’s Disease is confusion and fear. There is self-awareness, at this point, within our loved ones that something is really wrong. They don’t know what it is, but the feedback around them, spoken and unspoken, tells them that they can’t trust themselves. 

    Persistent hallucinations leave them with blurred lines between what’s real and what’s not. Constant corrections to the information our loved ones believe is true creates widening doubt. Repeated proofs that disprove what our loved ones believe to be accurate create insecurity. 

    All of this also creates anger and fear because humans are wired to trust themselves – their reasoning, their assessments, their intuitions, their processing of the external world – more than to trust any other human being. When that innate ability is constantly challenged and proven faulty, it’s scary and it is infuriating.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 4 Excerpt

Dec22

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis is the fifth installment in a series of posts that includes a brief excerpt from each chapter as a preview of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 4, which discusses in detail the fourth step in the journey through dementias and Alzheimer’s Disease where visual and auditory perception is affected, resulting in hallucinations.

This chapter shows how these hallucinations present themselves, what the impact is on our loved ones, and how we as caregivers should respond to them both medically and personally with kindness, gentleness, and honesty.

Although lying and dishonesty in this step is overwhelmingly encouraged by support groups and resource books – they call these “fiblets” – I am adamantly opposed to any kind of dishonesty with our loved ones with dementias and Alzheimer’s Disease.

When we practice dishonesty of any kind, we destroy our character and our trustworthiness. Our loved ones entrusted us with their lives. Lying to them breaks that trust.

And once dishonesty becomes a habit in one area because it temporarily makes a difficult situation – hallucinations, for example – seem easier, we will eventually, by default, begin to employ it as our response in other areas of our lives where and when difficulties arise until it affects every area of our lives. That’s how we peeps work, unfortunately.

I know this fourth step will catch us and our loved ones off guard as it emerges, but this chapter offers practical and accessible information to navigate this step successfully.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

going gentle into that good night divider

Excerpt “Chapter 4: ‘When Men on the Chessboard Get Up and Tell You Where to Go'”

“Well-formed and insightful hallucinations (either manifestations of things and/or people who are not there or the perception that still objects are moving) are overwhelmingly prevalent in our loved ones suffering from Lewy Body dementia, where Lewy bodies are present in the temporal area of the brain (particularly in the amygdala and parahippocampal regions).

limbic system structure you oughta know going gentle into that good night books

The amygdala is linked to aggression and emotions, and is involved in emotional learning, forming long-term memories, and the hormone secretion (along with the pituitary gland) that tells the adrenal glands to release the copious amounts of adrenaline associated with the “flight-or-fight” response to fear, anxiety, and panic.

The parahippocampal (surrounding the hippocampus) region of the brain is responsible for encoding and retrieving memories of landscapes and scenery (faces and facial recognition happens in the fusiform gyrus region of the brain).

Early hallucinations are often seen in short-lived episodes of delirium that are triggered by stress (hospitalizations are the most frequent source of this kind of stress and the subsequent episodes of delirium).”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 3 Excerpt

Dec21

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis is the fourth in a series of posts that includes chapter excerpts from You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 3, which comprehensively looks at the the step in the journey through dementias and Alzheimer’s Disease where communication difficulties arise. It discusses the kinds of communication problems that arise and how we as caregivers can help our loved ones bridge those gaps.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

going gentle into that good night divider

Excerpt “Chapter 3: “’Don’t Think I Know What to Read or Write or Say'”

“As more cells die, the functions that these areas of the brain control become more profoundly affected. Language function is controlled in a deeper portion of the temporal lobe, so in the case of just Alzheimer’s Disease, communication problems might not show up for a while.

However, if our loved ones are suffering from other dementias, such as vascular dementia which causes clusters of cell death through the brain, even the innermost parts, because of a stroke or chronic small-vessel ischemia (usually the result of mini-strokes or transient ischemic attacks, also known as TIA’s), then communication problems may occur sooner.

Regardless of how long it takes, communication problems are the third definitive step in the journey, whether it’s a short step or a longer step.

Communication problems in dementias and Alzheimer’s Disease include fall under the general term of aphasia.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 2 Excerpt

Dec19

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis is the third in a series of posts that includes chapter excerpts from You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 2, which comprehensively discusses the step where our loved ones with dementia and Alzheimer’s are aware that something’s wrong neurologically, but they don’t know what and the internal and external conflicts that presents for them and us.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

  1. The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
  2. The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
  3. The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

going gentle into that good night divider

Excerpt “Chapter 2: ‘There’s Someone in My Head, But It’s Not Me'”

“In this stage of dementias and Alzheimer’s Disease, where mild cognitive impairment is more obvious, but the extensive neurological damage characterized by the later steps in these diseases has not yet occurred, most of the time our loved ones will function fairly normally and will be lucid.

However, they have an, sometimes quite acute, awareness of their own mental slippage and that something is not quite right. In other words, they are aware they can’t remember things, they are losing things, they are having trouble following directions, and they can’t seem to hold on to new information for any length of time.”

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 1 Excerpt

Dec18

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis series of posts about You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease began with the forward to the book and an explanation of why I wrote this book and why you should read it.

This post will include an excerpt from chapter 1, which thorough covers the first step in the journey through dementias and Alzheimer’s Disease, which is mild cognitive impairment (MCI).

The title of the book, as well each chapter title, may, depending on your age and musical tastes (mine run toward eclectic, alternative, and indie) sound familiar.

That was intentional on my part for two reasons.

One reason is because music is a universal language, and music can often be comforting to our loved ones with dementias and Alzheimer’s Disease.

The other reason – one that caregivers do continually – was to look at something familiar in an entirely different context that broadens our relationship to and with it. If you’re familiar with these lines (a list of the song titles and artists for each song line/chapter title is included at the end of the book), you will never listen to these songs the same way again after reading this book.

And that’s the point: life is never the same after our loved ones and we have gone through the journey of dementias and Alzheimer’s Disease. Everything changes, including us.

Most of the changes are personal, internal, and deep. They should be positive in terms of growth in love, compassion, empathy, care, concern, gentleness, kindness, patience, and self-control.

But they will also reflect a greater recognition and understanding of a hostile world that needs change (we have faith that change will come) and a greater awareness – and peace with – our own frailty and mortality as mere humans who only dance on this earth for a short while.

And, on the other side of the journey, we often find ourselves mostly alone, except for a few along the way that we know or befriend who have or are sharing the same journey, in the changes to who we are and how we view the world and how we view life.

That’s not a criticism to those who haven’t been through this journey – and we pray they don’t have to go through it, but we know the odds are not in their favor – but simply a statement of fact.

It’s sad at times and painful at times, but it’s the reality that, for now, we have to live with and move forward in spite of.

going gentle into that good night divider

Excerpt “Chapter 1: ‘I Don’t Remember, I Don’t Recall'”

“Because it affects short-term memory, mild cognitive impairment affects the recent past and the present.

What does this look like in practical terms?

  1. Repeating things in conversations, stories, and writing

    This manifests itself in telling the same things over and over, and with each retelling, it’s as though it’s the first time telling it. It is very similar to the effect of a scratch in an old vinyl record, where that point in the track gets replayed over and over until someone goes over and physically lifts the needle up and moves it beyond the scratch. However, with our loved ones, it’s rarely that easy or that simple.

  1. Frequently losing and misplacing things

    We all, from time to time, pick things up, get derailed in going from point A to point B, laying the things down somewhere in between, and then having no idea where we put them when we finally get to point B. However, with mild cognitive impairment, this becomes normal.”

     

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Forward to the Book

Dec17

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseAs I am researching and writing other posts for this blog – the second post in the series on “Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease” is almost complete – I am also going to be including short excerpts from each chapter in the book, You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

This book is the only one of its kind. It is written by someone, who like you are or will most likely will be at some point in your life, who has walked step-by-step through the caregiving journey with a loved one.

For me, that person was my mom.

I knew practically nothing about dementias and Alzheimer’s Disease when we started the journey.

But perhaps my mom chose me as her medical, legal, and financial power of attorney, not just because she trusted me – even when she couldn’t remember that she did – and not because I was always, as an adult, in continual contact with my dad and her (and daily with Mama, after Daddy died) and knew what was going on, what they were dealing with or needed, and did my best to take care of those needs.

I think she also chose me because she knew that between my love and protectiveness of my parents, my intense interest in biology and neurology, and the profession I consciously choose not to pursue in spite of a strong desire to do so – genetics – because I could foresee the ethical and moral issues that I was not and would not be willing to compromise on, that I had the advanced research skills and very good scientific background to be the best proactive and involved advocate for her.

Since Mama’s death in August of 2012, I have been actively involved in sharing the hands-on, day-to-day lessons – and information – we learned on our our journey through dementias and Alzheimer’s Disease.

While each type of dementia is unique (which is why I have a “Layperson’s Guide” series on the common types of dementia as well as a guide to the rare types of dementia on this blog), the journey through these diseases is the same.

As I expanded my involvement in education and sharing information to participating in and leading support groups for caregivers of loved ones with dementias and Alzheimer’s Disease, I became aware of the need for You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

The same questions about the steps in the journey through dementias and Alzheimer’s Disease face us and our loved ones. If not now, somewhere in the future.

Not a single person on this planet, with the burgeoning rate of dementias (including lifestyle dementias), will escape having to deal with dementia of some type personally. 

The questions are the same. What is this? What does it mean? Is it normal? Where is my loved one in the journey? How do I handle it? How can I help my loved one handle? What can I expect next? How will it end?

You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease answers all of those questions with comprehensive, usable, and practical information you won’t find anywhere else.

I know because I looked for it when my mom and I began our journey. It wasn’t there. But with this book, it is now. 

That’s why I’m going to include the whole forward of the book below and why I will excerpt each of the chapters so that you get an inside look at why this book will be an invaluable resource for everyone involved in the journey through dementias and Alzheimer’s Disease.

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“Forward” – You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease

“This book takes a comprehensive look at each of the steps in the journey through dementias and Alzheimer’s Disease. I’ve seen, in my own experience (I went, side-by-side, through the journey of vascular dementia, Lewy Body dementia, and Alzheimer’s Disease with my mom all the way through the end of her life) and in supporting, educating, and counseling others who are on the journey, that there is a basic lack of comprehension about the big picture of how these neurological diseases progress.

My purpose here is to lay that big picture out in concrete and discrete steps that follow this pattern for each step:

  1. What is happening
  2. What it looks like
  3. How to address it

I cannot emphasis enough that a timely intervention that consists of geriatric psychiatric hospitalization where an accurate diagnosis can be made and a medication regimen to address cognition, psychological issues, moods, behaviors, and psychosis started (it will be tweaked along the way), along with our love and advocacy, can minimize and stabilize a lot of these and increase the quality of our loved one’s lives.

This should be done sooner rather than later. It won’t cure dementias and Alzheimer’s Disease. There is no cure for these neurological diseases. They are always fatal.

However, the proper medication regimen can increase the quality of life for our loved ones in a way that gives them an opportunity to live life as fully as they’re able, to enjoy it as much as they’re able, and to enjoy their relationships with those they love, including us. The goal is to stabilize, not marginalize or invisibalize (being almost comatose is not quality of life), so it’s our job to find the right medical care team to make this happen for our loved ones.

Waiting only hurts them and endangers their lives. And it could end their lives prematurely. None of us want that. So, I urge you to get psychiatric help and medication on board as soon as possible!

The tone of this book is conversational. As I’m writing it, I’m imagining each of you reading it sitting beside me or across from me, as we share a cup of coffee or a glass of tea, talking as friends.

Because we are, even though you and I have never met in person.

I know intimately the struggles you’re dealing with now, as well as the struggles your loved ones are dealing with. I know the sense of helplessness you and they wrestle with. I know the deep, deep desire to fix it, to make it better, to wave a magic wand and make it disappear.

I know the moments of great sorrow and the moments of great joy you and your loved ones share. I also know the great love you have for each other.

And I know the battles you are going to face after this journey is over. It changes you forever. But the lessons you’ll learn are the ones that you will share with others, as I’m sharing mine with you. To not pay them forward is to waste the pain.

If you have not yet read my practical and loving caregiving book, Going Gentle Into That Good Night, please be sure to purchase that as well.

For regular updates and new information on dementias and Alzheimer’s Disease, please subscribe to this blog.

And always, if you have any questions that I can help you with or you just need someone to listen, please email me. I will do the very best I can do to provide you with answers, resources, empathy, and encouragement.”

Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease – Part 1

Dec4

loving caregivingThere are everyday practical needs that almost no one ever talks about in providing care and making life easier for both us as caregivers and the loved ones with dementias and Alzheimer’s Disease that we care for.

This next series of posts will discuss these needs, how to address them, and give resources that are invaluable to the care of our loved ones.

One of the needs that arises as we walk through the journey of dementias and Alzheimer’s Disease with our loved ones is keeping clothing clean during eating or drinking. The progressive neurological damage of these diseases affects not only spatial vision, but also the nervous system.

It is not unusual, especially as these diseases progress, for our loved ones to “miss their mouths” when eating and drinking and to develop tremors, both of which can lead to spills of food and drinks on their clothing.

adult bib going gentle into that good nightA great aid to help keep clothing clean is an adult clothing protector.

These are primarily known as adult bibs. However, there is a dignity aspect to caregiving for our loved ones with dementias and Alzheimer’s Disease that is compromised with terms that are traditionally used in infant care. So I made it point with my own mom to not use the infant-related terms, but to use adult terms to refer to these helps and aids.

Therefore, throughout this post, I’ll give you the dignity term I used and ensure that you have the term used by suppliers of these items.

There are many different types of adult clothing protectors to choose from, but the most cost-effective (generally less than $6/clothing protector) and functional type is made with terry cloth and velcros around the neck in the back.

These adult clothing protectors are durable, machine-washable, and are easy to get on and off. My suggestion would be to purchase at least eight of them, so that you can also have a couple of clean ones on hand even when you are doing laundry.

A resource that has good quality and good prices on adult clothing protectors is Personal Touch Health Care Apparel.

Another issue that will, at some point, arise with our loved ones with dementias and Alzheimer’s Disease is incontinence (urinary, bowel, or both). Therefore, we’ll need to have an adequate stock of adult underwear (adult diapers) on hand at all times.

Not all adult underwear is created equal.

There are two types of adult underwear: tabbed and pull-up. The tabbed type of adult underwear is the preferred type for our loved ones who are bed-bound, because it makes changing the underwear easier.

If our loved ones with dementias and Alzheimer’s Disease are mobile to any degree, then the pull-up adult underwear is the best option.

Quality matters. Most of the brands of adult underwear available in stores like Walmart, Sam’s Club, Target, and Walgreens are not very high quality. They tear easily, usually don’t fit well, and often are not strong enough to handle any more than occasional incontinence problems.

Price matters. Buying adult underwear in bulk is the preferred method, since once our loved ones with dementias and Alzheimer’s Disease become incontinent, changes in underwear throughout the day (and, sometimes, at night) become frequent.

The brick-and-mortar retailers sell adult underwear in small quantities, so the cost of stocking up becomes financially prohibitive.

For quality, quantity, and price then, online companies are the best option for buying adult underwear for our loved ones with dementias and Alzheimer’s Disease.

Northshore Care Supply is the online company that I used to buy adult underwear from. They were excellent in price, quality, quantity, and short delivery times.

adult underwear going gentle into that good nightThe particular brand of adult underwear that worked best for us was Tranquility® Premium Pull-Ons (Overnight style). Because my mom began to experience urinary urge incontinence in her late 70’s and because she was on a daily dose of diuretics for congestive heart failure (which I had to increase temporarily when she had a 5-or-more pound weight gain in 24 hours, which meant fluid was collecting around her heart), this style and brand of adult underwear met all her needs.

It was not bulky and it was very comfortable for my mom to wear and neither of us had any complaints about them at all.

Other things that most likely will be needed in providing care for incontinence with our loved ones with dementias and Alzheimer’s Disease include disposal gloves, flushable cleansing wipes, rash cream, and protective pads for beds and cloth upholstery.

vinyl disposal glovesDisposable gloves should always be used when coming into contact with human waste. This helps protect both us as caregivers and our loved ones with dementias and Alzheimer’s Disease (I recommend keeping a small, plastic-lined covered trash can in the bathroom and emptying the trash can after each clean-up. This eliminates the possibility of contamination and keeps the bathroom clean and odor-free.) 

A 100-count box of disposal gloves (I recommend vinyl because they are both durable and the least expensive) is about the same price no matter where you purchase it, so there are plenty of options for buying them. However, I would recommend that you always have at least two boxes on hand.

flushable cleansing wipes going gentle into that good night

Flushable cleansing wipes can be purchased in bulk as well. Look for a brand that is for sensitive skin and that contains aloe. NorthShore Care Supply carries the Cottonelle brand in bulk and that is where I purchased mine. However, you can also check eBay (Amazon tends to be more expensive) for good pricing on bulk purchases as well.

At times, incontinence issues with our loved ones with dementias and Alzheimer’s Disease will lead to the development of rashes. This should be rare, because we as caregivers are responsible for keeping our loved ones changed and clean as adult rash creamoften as is necessary. However, because we’re dealing with aging skin and sensitive skin in our loved ones, rashes may develop from time to time.

The best rash product for adults that I found is Balmex Adult Care Rash Cream. It can be purchased either online or at stores like Walmart or Target.

The last item we’ll need to help our loved ones with dementias and Alzheimer’s Disease when they begin to experience incontinence is protective padding.

disposal-paddingIf our loved ones are bed-bound and immobile, then disposal protective pads for changing underwear and to protect bedding are the best option. I recommend a large size and the highest absorbency available, since these will be used overnight as well.

NorthShore Care Supply offers a lot of options for disposal protective pads, and they sell in bulk at very reasonable prices, so they are my recommendation for purchasing these.

If our loved ones with dementias and Alzheimer’s Disease, however, are mobile and dealing with incontinence, I suggest purchasing washable protective pads.

Although they cost more, because they are washable, they end up being a cost-efficient option. They are also more absorbent and they can be put on any surface (leather, cloth, bedding, etc.) to fully protect the surface.

washable protective pad going gentle into that good nightMy recommendation is to buy a medium-to-large size and to buy enough to cover surfaces that our loved ones will be sitting on (don’t forget vehicles) so that they don’t have to be moved each time our loved ones move.

In the next post, we’ll look at grooming and bathing assistance items that are helpful in caring for our loved ones with dementias and Alzheimer’s Disease.

Gratitude for Being Able to Care for Our Loved Ones with Dementias and Alzheimer’s Disease

Nov24

gratitude care dementia Alzheimer's Disease loveChoosing to be the caregiver for our loved ones with dementias and Alzheimer’s Disease is a conscious, deliberate, and willing choice of sacrifice, selflessness, and, ultimately, love.

However, in the big scheme of things, this choice, this action on our parts is our acknowledgement that we are fulfilling the circle of life for parents – and, in some cases, grandparents – who made conscious, deliberate, and willing choices to make sacrifices in their own lives, to act selflessly, to love unconditionally when they brought us into their lives.

Like many of our loved ones become, if they live long enough with dementias and Alzheimer’s Disease, we were totally helpless, utterly dependent, and needed 24/7 care and attention, as well as love, soothing, and comfort.

There was no reticence, no holding back, no wavering in the commitment our loved ones made to us in those needy, weepy, sometimes trying, sometimes scary, sometimes exhausting beginning days, weeks, months, and years of our lives. 

thankfulness for being able to care for our loved onesInstead there was gratitude.

The sacrifices – and they made many, some deep and hard and of which we are totally unaware, sacrifices – along the way for us were worth whatever they were giving up.

The selflessness involved was never an issue because they loved us that much. It was always less about them than it was about us.

And that love was always unconditional. Even when we tried their patience without end. Even when we got into one thing after another, sometimes making little messes and sometimes making huge messes. Even when we unknowingly embarrassed them with unapologetic frequency in front of both strangers and friends. Even when we were, at best, a handful, and, at worst, out of control.

At the end of each day, we knew we were loved and that no matter what else happened, we always had a safe place in the world to count on, to come home to, to be comforted in.

Did they get tired? Yes.

Did they get frustrated? Yes.

Did they get angry? Yes.

Did they sometimes just want to throw their hands up in the air and say “Enough already?” You bet.

Did they handle everything with grace and perfection? Absolutely not.

Did they try? Absolutely.

Did they quit us, even when we had ripped the sleep out of their nights, the peace out of their formerly-tranquil lives, and the color out of their hair? No.

Why?

Because gratitude trumped all those temporary setbacks and disruptions. They saw us as gifts from God and they saw being able to love and care for us as an opportunity to thank God for the gifts He had given them.

And herein lies the reasons we should be thankful for the opportunity to take loving care of our loved ones with dementias and Alzheimer’s Disease.

Our loved ones have been and are gifts given to us by God. How best to show our gratitude to them and to our Creator than to love and care for our loved ones with dementias and Alzheimer’s Disease, as they did for us, when they need us most and depend on us most?

Caregiving is not easy. It is hard, demanding, and often thankless work that requires an unshakeable commitment to persevere in spite of obstacles, in spite of hurts, in spite of the numerous losses it will bring to our own lives.

Caregiving, then, is a gift that each of us has the opportunity and choice to accept or reject.

If we reject that gift, then we are rejecting an incredible opportunity to fully appreciate and to be eternally grateful for the sacrifices, the selflessness, the unconditional love that our loved ones and God Himself, through His Son, made, showed, and gave us, not because we asked for them, but simply because we mattered that much to them.

If we accept that gift, on the other hand, we are the beneficiaries in so many ways that far exceed the challenges we are also accepting.

With this gift, we become kinder people, gentler people, more empathetic people, more understanding people, more patient people, more long-suffering people, more merciful people, more self-controlled people, more humble people, and more loving people.

The gift of caregiving for our loved ones with dementias and Alzheimer’s Diseases also gives us the blessings of becoming more courageous, more comforting, more forgiving, stronger, more compassionate, and more sympathetic.

And finally the gift of caregiving increases our faith and our faithfulness: faithfulness to the commitments, physical and spiritual, that we make in our lives; and faith in God and His word and His promises that a time is coming when all things, including our loved ones with dementias and Alzheimer’s Disease as well as those of us who care for them with our limitations, our faults, our flaws, our mistakes, and our missteps, will be completely healed.

There is much to be grateful for as we love and care for our loved ones with dementias and Alzheimer’s Disease. I have not even scratched the surface of covering all the areas where we experience gratitude in this journey with our loved ones.

But my hope with this post is that each of us will think about and find the gratitude in our personal experiences that overshadows the pain, the sorrow, the losses, which temporarily sting and grieve us, but in the balance transform us in more mature and more thankful iterations of ourselves.

 

 

A Little Appreciation Expressed Goes A Long Way to Let You Know That Your Efforts Are Not For Nothing

Sep10

very inspiring blogger award nomination going gentle into that good nightAs a dedicated and passionate educator, advocate, researcher, writer, counselor, supporter, encourager, and someone who has walked firsthand through the journey of dementias and Alzheimer’s Disease with a loved one who spends a lot of waking hours – as well as many hours when I should be sleeping – devoted to making sure there is no lack of practical and usable information and resources available to those who are currently going through or will be going through this journey with their loved ones, it can often seem, with very little tangible feedback (I know people are reading the blog), that I’m wasting my time and just talking to myself.

But every time I start wondering “What’s the point? Nobody cares anyway.,” I remind myself that it’s worth it if only one other person on the planet obtains the help, the information, the encouragement, the empathy, or the “one person besides me gets this” they need.

On the other hand, it is encouraging once in a while to have someone tell you that the work you’re doing is appreciated. It means as much to have a fellow blogger whose own work is appreciated to consider what you provide a source of inspiration.

(None of us is in this for recognition and praise. We’re doing it because we’ve been there and we know what you’re dealing with if you’re there now or what all of those of you who will be dealing with dementias and Alzheimer’s Disease in the future will face.

We know what it’s like to have no information, no support, no help, no nothing and to have to figure out on our own. Our efforts are to not waste the pain, but to pay it forward so that others don’t have to face what we faced.

This is a labor of love and service for the rest of the human race that we are dedicating to providing to each of you.)

I was nominated for the “Very Inspiring Blog Award” by Kay Bransford who blogs in Dealing with Dementia about the journeys with her dad (now deceased) and her mom (living and progressing) through dementias and Alzheimer’s Disease.

It’s nice to be appreciated and I would like to repay the compliment to several other bloggers. The rules are simple:

  • Thank and link to the amazing person who nominated you.
  • List the rules and display the award.
  • Share seven facts about yourself.
  • Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
  • Proudly display the award logo on your blog and follow the blogger who nominated you.

Seven facts about me:

  1. My parents were both in the medical field, and although I excelled in and loved the biological sciences (especially genetics), to my dad’s dismay, I didn’t choose the medical profession as my career. Armed with a humanities degree (with practical minors in math and accounting) and a concrete plan to start my career in technical writing, I morphed into a full and expansive career in information technology.
  2. My mom developed dementias (vascular and Lewy Body) and Alzheimer’s Disease right before my eyes, but I didn’t have the knowledge and the resources to put it all together until it was no longer undeniable. I don’t ever want there to be another person in the world who has to go through the rapid and, sometimes, hard catch up the way I did.
  3. I am thankful that I was able to fulfill the circle of life for my mom, even though I made mistakes along the way, and, to the best of my ability, I was able to fulfill my promise to her that I would do everything within my power and control to ensure that her “second childhood was better than her first childhood.”
  4. Being able to provide hands-on, side-by-side care for my mom – and to walk beside and with her every step of the way to the end – was a gift from God for which I am thankful. I’d do it all over again in a heartbeat.
  5. I learned things about myself I needed to know as I walked the journey through dementias and Alzheimer’s Disease with my mom. I learned lessons that I could not have learned any other way.
  6. In the course of the journey – and beyond – I changed and am continuing to change for the better and matured and continue to mature into a kinder, gentler, more patient, more forbearing, more forgiving, more understanding, and more compassionate version of myself. Although I still have miles to go before I sleep, this much-needed and long-overdue upgrade, with its fixes, patches, and, in some cases, start-from-scratch recoding put me further down this road of change than I was when I started.
  7. God gave me the gift of being able to write. If there’s praise to be given, it belongs to Him. I am responsible for using this gift in a manner that is worthy of the One who gave it to me. To the best of my ability, I strive to do that with every word that I write wherever I write it.

The blogs I nominate are:

My Neighbor Miss D – Miss D’s neighbor Nancy blogs about dementia, elder abuse, and the importance of neighbors caring for neighbors who are alone in their journeys through dementias and Alzheimer’s Disease

Lewy Body Dementia: Ten Plus Years of Care, Commentary, and Cleaning Up. – Joy Walker offers humorous and information commentary on caregiving and Lewy Body dementia

The Long and Winding Road: A Journey Through Alzheimer’s Disease – Ann Napoletan blogs about her journey as a caregiver with her mom through Alzheimer’s Disease and also works as an advocate for Alzheimer’s Disease research

Dementia and Dominoes – Pam Stephan gets two nods in my nominations and this is the first, where she shares memories of her dad, who has dementia, and caregiving challenges and solutions

Dining with Dementia – Pam Stephan’s blog with fast and easy recipes for dementia caregivers and their loved ones

The Daily Goodbyes – Cia blogs about her life with her father, who has Alzheimer’s Disease

D 4 Dementia – Beth Britton is a UK blogger providing advocacy and information for caregivers

My Demented Mom – Compelling blog that chronicles the author’s mother’s journey through dementia to death and offers great information for others on this journey

Momma and Me – Arlene shares the story of her mom’s journey through Lewy Body dementia with compassion, humor, and wisdom

Portrait of a Morbid Optimist – Katryna Ormiston’s beautiful blog – her tagline is perfect: “finding love in death” – about caring for her father through his journey with dementia

Let’s Talk About Family – Lori’s blog journals the ups and downs of family life as children become caregivers for their parents with dementia

Story & History – Theresa Hupp’s fascinating combination of her family’s, including dementia, and her journey through life and the history that accompanies it appeals to the history lover in me

Reflections on Dementia, Caregiving, and Life in General – Written by a caregiver in Singapore, this blogger offers a personal, yet international, perspective on dementia and caregiving as she goes through this journey with her mom

Creating life with words: Inspiration, love and truth – Kate Swaffer’s blog is a must-read blog on dementia, family, and hope

Memories From My Life – Pat White’s blog about caring for her mom since her Alzheimer’s Disease diagnosis in 2007 is a topical, heartfelt, and compassion story of their journey together

Thank you, Kay, for nominating me. I appreciate it, my friend and fellow traveler on the journey through dementias and Alzheimer’s Disease.

 

 

What a Long, Strange Trip It Is: Life, Death, and Memories in “Fields of Gold: A Love Story”

Sep7

A post from my family memoir blog that belongs here as much as it belongs there.